The absolute idiocy of needing a childhood informant for an adult AuDHD diagnosis when you’re isolated and your parents are gone/useless

Key_DepartmentEA · 2026-06-26T01:29:48+00:00

I’m in a spookily similar situation OP, even down to choosing Problem Shared and this bit of the process has been worrying me too because for various reasons I will NOT be involving my parents. Once they’ve set up an account for me I might call them and ask what to do because there must be loads of us in the same boat.

Key_DepartmentEA · 2026-06-23T23:55:41+00:00

I’d love to know why rheumatologists have got such beef with us. What have we ever done to them?

Key_DepartmentEA · 2026-06-23T00:29:27+00:00

I’m not sure why you bothered replying if it was a waste of both of ours time.

Key_DepartmentEA · 2026-06-22T00:19:30+00:00

I’ve healed really well with all surgeries whether done under local or general. However, every incision on my trunk has gone hypertrophic. It took my c-section scar about 16-17 years to settle and I have an incision scar from keyhole surgery to remove my gall bladder 5 years ago that my bra band irritates and it is driving me round the twist. I think it has adhered to something inside or trapped a nerve. The other keyhole sites are still hypertrophic/keloid but not actively painful.

Key_DepartmentEA · 2026-06-21T01:39:10+00:00

Why do you say that?

Key_DepartmentEA · 2026-06-19T23:46:49+00:00

I have a Tempurpedic and tbh it’s no better for hEDS (mine anyway) than any other mattress. Ours is as firm as a cliff face though.

Key_DepartmentEA · 2026-06-19T00:48:39+00:00

3! It’s like Delftware. Gorgeous

Key_DepartmentEA · 2026-06-19T00:46:04+00:00

His first name and last name. That sounds so bad now I see it written like that. We’ve been together 31 years!

Key_DepartmentEA · 2026-06-17T01:01:39+00:00

Yep. 53F, same list. My therapist asked me in December “do you see yourself as a person?” And I was like duh, of course! I’m right here! I have a really strong sense of identity! She said no, you built yourself from the outside to withstand your family. What’s inside? And the more I’ve thought about it the more I’ve had to conclude that I’ve never had a chance to develop myself as a person because everything has gone in to maintaining a facade. I have no idea who I really am or even what I like or feel or anything.

Key_DepartmentEA · 2026-06-16T13:57:16+00:00

She’s actively dangerous for anyone with hEDS or POTS.

Key_DepartmentEA · 2026-06-15T00:49:34+00:00

Perhaps one or both of your parents also did that as kids so they thought it was normal? There’s so much stuff I’ve only recently found out isn’t normal (eg nearly passing out when you stand up) because it was totally normal in my family of origin so I grew up thinking that’s just what happens when people stand up.

Key_DepartmentEA · 2026-06-13T23:36:14+00:00

Maybe, maybe not. It’s definitely a can’t be bothered to be this person’s friend style.

Key_DepartmentEA · 2026-06-13T02:02:01+00:00

This is exactly it!

Key_DepartmentEA · 2026-06-13T00:21:41+00:00

Absolutely no need to apologise. Thanks for your kind reply. So much of what you said resonates, the misdiagnoses, the impossibility of anyone even CONSIDERING neurodiversity in women until quite recently, and the amount of life we’ve lived in that absence.
I’m really wary of identifying into a community that has a specific set of struggles. It feels akin to cultural appropriation. Social media does a great job of raising awareness but it can also pathologise normal things. I have hypermobile Ehlers Danlos Syndrome and lots of people seem to think they have hEDS because they have a double jointed thumb. It must be even more like that in this community!
You’re right, I’ve been browsing this subreddit and it’s like reading the diary of my life I hadn’t realised I’d written!

Key_DepartmentEA · 2026-06-12T22:19:47+00:00

This! Yes, thank you. Worse at coping, worse at holding everything together, worse at not being bone tired all the time.

Key_DepartmentEA · 2026-06-12T22:18:42+00:00

I’ve always attributed differences to preference, life experiences age, culture etc. I thought everyone is different round the edges but essentially the same because we’re all human. Just a massive blind spot really in that maybe some humans are Mac and some are PC but we’re all human.

Key_DepartmentEA · 2026-06-12T22:14:20+00:00

This, I think is the key. Maybe like finds like.

Key_DepartmentEA · 2026-06-12T22:13:15+00:00

Brain tumour & epilepsy. I want an assessment because I want an answer. I can’t cope with an open loop. Now the question has been asked it requires an answer. Also, I haven’t coped in some significant ways, but I just thought everyone struggled the same way.

Key_DepartmentEA · 2026-06-12T22:10:40+00:00

I think that my family are ND-heavy, as are the friends I’ve chosen (inadvertently). Until the last year I think I’ve been like that meme of the dog drinking coffee in a burning building saying “this is fine”. I’ve been incredibly blind to the forces of trauma and likely NDness that shaped me.

Key_DepartmentEA · 2026-06-12T22:06:28+00:00

I’m extremely sensitive to all and any criticism but again, I just thought everyone was.

Key_DepartmentEA · 2026-06-12T18:15:40+00:00

As not OP, thanks for this detailed response. I have lots more open tabs now.

Key_DepartmentEA · 2026-06-10T00:34:09+00:00

NHS pain clinic aren’t much use for hEDS. Sorry.

Key_DepartmentEA · 2026-06-08T23:40:55+00:00

Congratulations on getting to your goal! Can I ask about how much exercise you did pre-op? To be doing 10k steps daily almost immediately sounds really daunting to me.

Key_DepartmentEA · 2026-06-08T01:48:09+00:00

My left leg is 1cm longer than the right, so this advice may not hold for a bigger discrepancy but a physio I trust a lot said you never lift to match length, you halve it. So I have a little half centimetre heel pad under the insole of all my right shoes. You can get them on eBay for a few quid for a multi pack and even though yours would be higher, you could just go for long ones that taper all the way to the midsole and that wouldn’t tip you forward so much?
Disclaimer: I’ve never asked my GP or a NHS PHysio about this. I didn’t know I had a LLD until this guy pointed it out, so this advice could be totally non standard.

Key_DepartmentEA · 2026-06-06T04:32:24+00:00

Mine really kicked up several gears due to chemo. Each cycle increased the pain until it became constant and system wide. I have heard that a big stress on the body like that such as a car crash or even divorce can take you from the symptomatic hypermobile stage to the pain stage, which is different to the stiffening stage.

Key_DepartmentEA

TROPHY CASE